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Everyone Wish Me Luck Tomorrow....


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12 replies to this topic

#1 Canadian Karen

 
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Posted 17 August 2004 - 04:34 PM

Tomorrow is my appointment with the Professor at St. Mike's Hospital who specialized specifically in Celiac. Wish me luck that I will finally be getting on the proper road to recovery.... I have two meds written down that people have suggested to me re chronic diarrhea, one is Modulon and I can't remember the other, although I do have it ready for the dr. tomorrow.... Hopefully, we can finally get this chronic diarrhea under control.....

Wish me luck, everyone!!! And keep your fingers crossed that he doesn't want to admit me for two weeks, put me on IV, shut down my bowels and treat me with prednisone - which is what my GI dr. said might be done......

Hugs, everyone.....
Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

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#2 stargirl

 
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Posted 17 August 2004 - 04:37 PM

GOOD LUCK! I'll be praying for you.
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Inconclusive Blood Results, Positive Dietary Challenge Results
gluten-free since January 2004

#3 Canadian Karen

 
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Posted 17 August 2004 - 04:45 PM

Thanks! I am keeping my fingers crossed, and my toes too!

I found the second med someone suggested: Hyoscyam 0.125 mg.

Apparently, it helps with both the abdominal pain and the diarrhea....

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#4 j9n

 
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Posted 17 August 2004 - 06:21 PM

Good luck Karen! My prayers and good thoughts are with you too!!
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#5 lyndszai

 
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Posted 17 August 2004 - 07:03 PM

Good Luck hope you get everything under control
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#6 celiac3270

 
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Posted 18 August 2004 - 03:27 AM

Good luck! We'll get this stuff under control....keep us posted.

-celiac3270
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#7 Guest_~wAvE WeT sAnD~_*

 
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Posted 18 August 2004 - 09:29 AM

Good luck, Karen!!!!
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#8 GEF

 
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Posted 18 August 2004 - 12:55 PM

Good luck, Karen!! I hope you get some answers and support!

Is this: Hyoscyam 0.125 mg, Levsin? Pretty neat since it can be disolved under your tongue... but, it's a sulfa drug... bad for me :angry:
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#9 Canadian Karen

 
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Posted 18 August 2004 - 04:21 PM

Hello everyone.

Well, I have had some good news and some not so great news....

Professor Dr. Moore was one of the most knowledgeable dr's I have come across in regards to celiac. He spent over an hour with me explaining things, possibilities, complications, etc.

Basically, something is really quite askew..... I can't remember which one he was talking about, but one of the tests from back in June with Dr. Devlin, he said was sky high. It was over 100. He says there are several possibilities for my failure to show improvement on the gluten free diet.

Number One: He said definitely to stay lactose free as that is a major irrititant to a celiac because the part of the villi that digests lactose is eaten away and there is no possible way that we can digest it.

Number Two: He wants to do a full colonoscopy within the next two-three weeks, with several biopsies, and depending what the biopsies show, he will decide then if I require prednisone treatment.

Number Three: He talked alot about the possibility of Collagenous Colitis I may have along with my Celiac.

Number Four: I must remain on a high fibre, lactose free, low "flatogenic" diet.
No bananas, apples, cherries plums, prunes, or their juices.
No lentils, chick peas, kidney beans, cabbage, cauliflower, broccoli & turnips.
(apparently, bacteria in the colon (large bowel) ferment these poorly absorbed carbohydrates to produce gases and irritating organic acids)

The high fibre (40 grams per day) includes 2 heaping tbsp. of Pro-Diem (psyllium) or 2 tablets of Equalactin (calcium Polycarbophil) at bedtime. Since Equalactin is only available in the States, I guess Pro-Diem is my only option. Too bad, because the professor said that the best results come from Equalactin. I must also have each day 2 servings of fruit, 2 servings of vegetables, 1 lettuce salad. He also wants me to have 2 - 3 tablespoons of yogurt with culture per day. I asked him about the acidophillis for the bacteria, he stated that in lab results, bacteria from yogurt grew at a much higher rate than bacteria from acidophillus.

I also can no longer take any Pepto Bismol, as he does not want the test results to be masked in any way by medication. He also took blood today.

Apparently, and ironically, if it is Collagenous Colitis, the first treatment he would start with is very high doses of Pepto Bismol tablets (8 per day) for 8 weeks. Sometimes, this totally clears it up. If that does not work, then the next step would be steroids.

After all of the tests are done and the results are in from the biopsies, that is when he will determine where to go next. He did seem to make it sound that there are many possibilities other than refractory, but of course, would not rule that out.

Also, another possibility he stated is that my thyroid could be causing problems. Apparently, when you have celiac and are susceptable to malabsorption, you cannot absorb your thyroid medicine very well. He will also be testing this further as my last test showed on the low side.

One good thing I found out today is that last year when Dr. Devlin was doing all the tests, one test he did was a small bowel biopsy. Apparently, this was to look for the abnormal T-Cell and produces lynphoma (sp?). That test showed negative. Yay!

Well, it has been quite a day! I have to say I do feel better knowing there are many more possibilities than just refractory. Also, he stated he is not going to start any medications until he knows which route is necessary to take.

I should find out within a couple of days when the colonoscopy is scheduled for....

Have a great day, everyone!

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#10 Canadian Karen

 
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Posted 18 August 2004 - 04:31 PM

Also, forgot to mention this.....

He asked me if I ever get swollen ankles. I said no, never. He said that was a positive indicator, because apparently, that is a major symptom of refractory.... something about our systems not being able to process something (I forget what he said), and that it usually travels down to the ankles......

And also, he mentioned that he thought I should also try oats with the psyllium seed husk to bulk up. I am quite terrified to do this though. He said that all studies recently have shown that oats are not problematic for celiacs..... Still leary of oats, though.....

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#11 Thomas

 
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Posted 18 August 2004 - 05:11 PM

Good luck with the new diet. Hopefully you'll be feeling better soon!
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#12 j9n

 
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Posted 18 August 2004 - 05:58 PM

Good luck Karen. I am glad that you are getting some positive feedback. I have been on that diet before too. I think I ate alot of rice, chicken, and sweet potatoes. Its all worth it if it makes you feel better.
I hope you feel better soon!
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#13 Canadian Karen

 
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Posted 19 August 2004 - 06:59 PM

I am eating a lot of potatoes and rice myself..... I find that it is both very easy on my intestines and is very filling.... I also eat a lot of red meat for the protein...

I do have a question though - for those who take psyllium seed husk, for maximum "bulking", should I take the psyllium before my meal or after my meal?

Thanks for any help!
Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown




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